Another Day to Pray 4/15/09

Reaching out! We need your faith.

We need help and we need prayers. It is another day and we are about the same. Kensley is having loose stools. It is starting to cause her bottom to be chapped, even though I constantly put cream on it. She is only having about three stools a day, which is good, but they are still watery. It is probably because of the antibiotics that the doctors have her on right now. Antibiotics can make the strongest of people have diarrhea. The doctors keep suspecting that she has bacterial overgrowth in her bowel, which is very common for short gut kids. All I know is that we need her bowel to work efficiently and perfectly, for her to start gaining weight, stop having watery stools, and maintain her fluid level on her own. These are our prayer requests. Most of you know that I have been struggling with Kensley's condition lately. I started this terrifying journey almost a year ago holding on to the strength and faith that I had in God. I put a smile on my face and told everyone that I was just waiting on God. Well, I waited and waited, and things got better, but they did not "get good". I wanted Kensley to escape this affliction. And so far, that has not happened. It has been over 10 months of being overwhelmed by diarrhea diapers, broken central lines, trying desperately to keep things sterile and keep my other children from feeling left behind, take care of my husband, house and dogs. The life that we had, the life we wanted, the life we planned is over. I guess I just needed some time to mourn. Time to come to terms with this new life and find hope in the things that are going right. God knew that. He also knew that my strength is not the part of the story that He wants to highlight. I had to become weak to show His power. I have to be totally completely utterly dependent upon Him, and I am-NOW. There is no way that I could continually change these diapers, deal with these medical procedure, and fluids, and blood draws, if God himself wasn't holding me up. My Hope has waned, but His is strong. I am so glad that even when I can't believe in myself, the Lord does. Pray for us, we will be praying for you. I also ask that you pray for all children with this issue. Now that I am in this situation, I am discovering sooooo many children who have this issue or one very similar. Some are making it, some are desperate for a transplant, but all are so special. May God bless them all and give their parents the strength to be caregivers, and parents. And, May God bless those who pray. Prayer is the most important weapon that God gives us. Pray for each other. In the meantime, we will be here calling on the blood of Jesus and asking for a complete healing. Tana

Easter Sunday 4/12/09

Happy Easter Sunday to everyone. May today bring you the renewal and resurrection of spirit that this day was meant to give.

As for the Frees, we are doing OK. Things are not exactly moving forward, but things are not getting worse either. Kaydee has been playing Little Dribblers, until she badly sprained her ankle. It was black and blue all the way up her leg. She missed three games out of the 10 that are played, but one game she went in anyway because another player fouled out. She was very brave and we were very proud of her. Cooper has been playing baseball. He is doing great and having a lot of fun.

As for Kensley, she has had a hard month. It all started after our Omaha trip. In Omaha she had to have a barium dye X-ray of her intestine, and she had a scope of everything(basically a colonoscopy and a endoscopy). This was very hard on her as you can imagine. She was recovering from the trip and tests, until she broke another central line, which J. told you all about in the last blog. While we were in the hospital getting the new line, we decided to have her G-tube placed in her stomach. This was not a simple procedure as it should have been. Kensley's stomach had shifted up under her rib cage and had to be pulled down and sewn to her abdominal wall in order to put a feeding tube in the correct place. It has been very hard to recover from this surgery. She was soooooo sore for 2 weeks. Also, her stools increased and became all liquid. NOT FUN. Watery stools cause Kensley to have a hard time maintaining her fluids and like anyone with diarrhea, she can become very dehydrated. So, we have been battling these things for weeks now, and Kensley has not gained any weight. We think that all the manipulation of her bowel and stomach, combined with travel and teething have caused her to develop bacterial overgrowth in her bowel. This is very common for Short Bowel kids, because most of them do not have a valve to control the flow of bacteria(which is naturally occurring in your bowel) from the colon to the small intestine. We will start an antibiotic treatment on Monday. Hopefully that will help her absorption and weight gain. We are not going to church this Easter. There will just be too many people there and we need a break from any bugs and other complications. BUT, through all of this Kensley has remained her happy and cheerful self. She plays and crawls and laughs and puts us all to shame with her positive attitude. Cruising the Hall!

Minnie Mouse Kensley!

NO NOSE TUBE!!!!

As for J. and I. We are pushing through each day. I admit that the days are getting to me. I wanted so much more for Kensley. I had hoped that we would escape this horrible affliction with some shred of a normal life, but we won't or at least we haven't yet. There is still time for God to work and I pray that He will. And there are worse places to be. We are not on a transplant list, just hoping to receive organs that might or might not save her life. And, our precious child is not mentally or developmentally challenged. She is active and happy. And, we still have a lot of time. Kensley is not quite a year old and her bowel could adapt a lot more and give her the ability to absorb fluids. Maybe even one day she will have fewer than 3 stools a day. There is still hope. We will keep keeping on and I hope that you all will too. There is still hope. There has to be, the tomb is empty! Tana